Please share your experience with epilepsy (seizure disorder).

I had my first epilepsy seizure at age 18. I was rushed to a hospital which diagnosed me as having a drug problem. When I regained consciousness my parents wanted answers from me. Well, so did the doctors. Guess what, I wanted answers too. My primary physicians sent me for an EEG. I was diagnosed with epilepsy, not drugs. I was first put on phenobarbital. I was having emotional difficulties dealing with the diagnosis. I stopped taking my medications but when the seizures started again, that was my wake. The phenobarbital was not enough so later Dilantin was added. I was always sleepy so phenobarbital was removed. I've been on Dilantin for about 27 years. I see a few of the side effects. My gums have receded, so I have trouble with hot and cold beverages. I get blood work every year to check my levels. I've only had one emergency visit to the hospital. I have grand-mal seizures. It took me about 3 years to get them under control. I still can't do bright flashing lights. I go into a catatonic stare. I try to avoid emergency vehicles. I'm very aware of the onset of a seizure. I get an awe of something is about to happen. My seizures can be quite violent with dropping, head twisting, body spasms and sometimes screaming. I never remember much when I regain consciousness. It's like a feeling that you have a gap in your memory. I'm blessed because the doctors were able to control my seizures with medicines, I had my license reinstated, which was a major hurdle for me. I'm still learning what can trigger my seizures, i.e., child birth, birth control, alcohol. I have a list.

I was diagnosed with epilepsy after I had my first seizure when I was 6 years old. I have been on numerous medications, from Dilantin, Depakote, Tegretol and many others over the last 51 years. At the age of 20 I was able to deliver a healthy son but have not been able to drive and cannot get employment, because my seizures escalated and I was laid off work. I take Dilantin 200 mg 4 times per day plus Tegretol XR 200 mg 4 times per day and clorazepate 7.5 mg 4 times per day. Even though I am under a neurologist's care my seizures have not stopped. I have a minimum of 10 seizures per day. The clorazepate pills that I take help stop any extra seizures that I may have late in the afternoon. I call it the "magic pill". I really would love to have a normal life as I am confined to my home and have to rely on my husband to take me to any appointments I may have. With all this medication I have to take I have added a lot of weight and now I have arthritis because I cannot go out on my own and exercise.

I have had epilepsy since age 4, and I will be 60 in November and I'm still having seizures. I have gone through so many drugs that I had to write them down just to remember what I have used. When I got my first job, I started a diary of when I had one and what I did. That was in 1975, and I still am doing my diary today. I can tell when they are going to happen, because I always had a bad stomach feeling. I would focus on something by me, start counting in my head and taking deep breaths to make them go away. Sometimes it would work, and sometimes I would have seizure. Today if I'm going to have one, my face feels like it gets flushed, so that I need a cool towel to cool down. When I have them now, I fall to the ground, when in the past, I used to mumble or rub my leg. Lately I have hit my head every time I go down, and sometimes it hurts the next day with a headache and blurred vision. This is a concern to me. What kind of damage am I doing every time I go down, which is about three times a month? I know what part of the month they are going to happen; I always say I have about 15 days of sane, calm days that I don't worry about them. My best memory of my seizures was from 1975-1990; I would have only three or four a year. I was on mysoline and dilatin then, but my dentist said I was ruining my gums and that I better get off that medicine. It has gone sour since then, but I am still here able to maintain my house and yard with the help of my sister. I go to work two days a week and clean appliances. Now I am doing a clinical trial drug. I have had some good days on it, but when we first started it, the dosages of meds had me walking like a drunken sailor on leave.

I began experiencing essential tremors and what I thought were just bouts of confusion. About five years ago, I worked outside in temperature extremes for nearly 40 years, so I just figured maybe I was getting worn out. I was also a hard-core meth and pot user for 18 years before I got clean in 1987. After many misdiagnoses by several neurologists, one finally figured out I was having focal seizures and he prescribed primidone for the tremors and seizures. As of late, however, I am experiencing more frequent seizures and I will be talking to him about changing meds. I wish someone would do a study on the long-term effects of meth use. I just seem to be existing and walking around in zombie mode most of the time. For the most part though, my faith and many friends keep me positive and happy to just be alive!

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